Endometriosis, What Is It? + My Experience.

There is a global unprecedented illness that no one is talking about, yet one in every ten women will be affected. It is a debilitating thief and could take away the ability to carry a child to full term or conceive and can give month round pain and compromise other organs. It is called endometriosis. I am the one in ten.

Endometriosis is a disease of the reproductive system where the inner lining of the womb is found on the outside and then has the ability to spread throughout the body. At the time of a women’s period, the endometriosis bleeds too causing inflammation and pain. Each woman experiences this differently, which is why endometriosis is not recognized by the government in the UK as a disability.

That makes me feel unsupported by the government who refuse to recognize something so impactive on daily life for a large number of women. Endometriosis isn’t a bad period. For those who feel pain, it is month round, long-term pain which worsens over time with every cycle. It can cause cysts which rupture and having endometriosis increases the risk of cancer. Endometriosis is as prevalent as diabetes but its name is not well known of. I never see it on lists of illnesses, or on posters at the doctor’s surgery. That makes me feel ignored.

I also feel ignored when I go into the doctor’s office with new pains or added symptoms and the best they can offer is a stronger opiate and a weak smile. I have even resorted to taking other people who are around me a lot to be an extra voice, as a push to get somewhere so I’m taken seriously, but often I’m left feeling more deflated than when I went into their office.

I think it is important for people to be educated on the signs of endometriosis so there is help and recognition for ourselves, family, friends and our daughters, as well as having support from other people not suffering directly.

The symptoms are painful heavy periods, painful intercourse and after pains, pain when passing urine or stool, pelvic pain that lasts more than the time of your period. Inability to conceive, bloated belly – triggered by food inflammation which is often mistaken for IBS. Brain fog, chronic tiredness, bone pain. Pain in other areas of the body as the illness progresses. On average it takes 7.5 years for a diagnosis, which has to be confirmed by a laparoscopy.

I feel like I have to battle doctors as well as an illness. I’ve been admitted to hospital after severe kidney pain, leg and ovary pain, all on my left side. I was in there for three days, as soon as they confirmed I had perfect kidney function, I was put on the gynecology ward, where most people had just had a hysterectomy or cancer. I was given Oramorph and co-codamol and paracetamol, but I was largely ignored even though this pain was worse than childbirth! The pain relief was not effective.

After three extremely long and exhausting days, I had a doctor, who had never met me before that second, come and say she did not deem me an emergency for an operation as I had one two years ago and I was to be discharged. No explanation or further inquiries, just they didn’t know. I was furious and told her I thought she was being lazy and how could she reach that decision without even meeting me after reading my notes. Nothing happened, but I felt what needed to be said was said at the very least. After returning home, I got progressively worse, I had to be cared for by friends and I lost a month of my life. I was in and out of consciousness with unrelenting pain and unable to walk or be effective in any way.

None of us wanted to go back to the hospital because they were so unhelpful before. I genuinely thought I was going to die and as the pain was so bad I couldn’t speak much. I had never felt so unsafe and scared. I had no answers to why my kidney pain was there. The pain in my kidney is still an issue to this day, obviously not to the extreme as before, but it is something I have to push through and live with daily on top of the other pain. After that awful experience, I was so desperate for a cure or someone to help me and other women, I participated in a clinical trial, which ended up not being beneficial to the
participants and was stopped. This was another crushing blow and I am back at square one. However, the people I met were amazing and completely understood what I was going through which did give me some hope.

The treatments offered to women are more of a band-aid. Women have been given more opiates than they care to remember, so its recognized as painful to warrant opiates but nothing beneficial in terms of treatment. Doctors discuss birth control as an option, but this doesn’t stop endometriosis growing, it just stops your cycle and not all women can get along with birth control. Zoladex is offered, a chemotherapy medicine used to put women into chemical menopause for 6 months, to work out if that’s effective and worth removing ovaries, however, removal of ovaries or womb is not always a proven cure for endometriosis and is a huge gamble in itself to consider.

Living with chronic pain is life changing, you suddenly have new limitations and friends forget about you because you are unable to be fun on your own terms anymore. You start to have an identity crisis as life leaves you behind. People are generally uneducated about this illness, as was I before I was diagnosed. I had never even heard of the word endometriosis. The illness in itself is also something women have to hide because it is period related and not appropriate to really speak out about. It sometimes feels like a future with endometriosis is a bleak, lonely, pain filled struggle, where endometriosis is going to steal people, events and myself from me.

The only thing that really helps is the support groups on social media. It’s full of people who understand as they’re going through the same thing. Hearing what they say confirms, for instance, the leg and kidney pain is common with endometriosis, but because there is not enough collective research being done, these things often go ignored by medics and are thought of as being unrelated. All too often I hear of women saying they’re being ignored until another internal organ is compromised and it is too late. The support found here is unlike any other because we all understand the impact the illness has on our body, emotions, life choices and relationships. It’s the basis of a good friendship anyway!

The women there echo my feelings of being ignored, especially by doctors and relatives. There is a lack of general representation globally of endometriosis. There are a lot of us if you add up one in every ten women. So why don’t we have a voice?